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Poor agreement on health-related quality of life between children with congenital hand differences and their parents.

Abstract：

OBJECTIVES:To determine agreement between children with congenital hand differences (CHDs) and their parents on health-related quality of life (HRQOL) and to explore whether characteristic variables were associated with this agreement on different domains of HRQOL. DESIGN:Survey. SETTING:University hospital, outpatient clinic. PARTICIPANTS:Children with CHD (age range, 10-14 y; N=106). INTERVENTIONS:Not applicable. MAIN OUTCOME MEASURE:Agreement on HRQOL was determined by comparing child self-reports and parent proxy-reports of the Pediatric Quality of Life Inventory 4.0 generic core scales, in Dutch. Agreement was examined both at group level and individual level. RESULTS:On a group level, children scored the same as their parents on a scale of 0 to 100 (physical health, 89.1±14.1 vs 88.0±15.6; psychosocial health, 80.6±13.4 vs 79.0±14.5; and total HRQOL, 83.5±12.3 vs 82.0±13.6). On an individual level, however, scoring was subject to high variation, with children reporting both higher and lower scores than their parent proxy. There were no major determinants for agreement; we only found that agreement was higher on emotional functioning in children with more affected fingers and on social functioning in bilaterally involved children. CONCLUSIONS:In terms of mean group scores, 10- to 14-year-old children with CHD agree with their parents or proxy on the child's HRQOL. However, on an individual level, they disagree; on some subdomains limits of agreement are as large as 30 points on the 0 to 100 scale. Therefore, care should be taken in cases where children are unable to complete the questionnaire in choosing the parents' score as a representative substitute for the child's score.

journal_name

Arch Phys Med Rehabil

journal_title

Archives of physical medicine and rehabilitation

authors

Ardon MS,Selles RW,Roebroeck ME,Hovius SE,Stam HJ,Janssen WG

doi

10.1016/j.apmr.2011.11.023

subject

Has Abstract

pub_date

2012-04-01 00:00:00

pages

641-6

issue

eissn

0003-9993

issn

1532-821X

pii

S0003-9993(11)00996-8

journal_volume

pub_type

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Poor agreement on health-related quality of life between children with congenital hand differences and their parents.